Healthy Families » Doernbecher Neonatal Care Centerhttp://www.ohsu.edu/blogs/doernbecher
Pediatric Health News From OHSU Doernbecher Children's HospitalSat, 05 Aug 2017 02:16:24 +0000en-UShourly1http://wordpress.org/?v=4.2.15Swimming in the NICUhttp://www.ohsu.edu/blogs/doernbecher/2016/04/18/swimming-in-the-nicu/
http://www.ohsu.edu/blogs/doernbecher/2016/04/18/swimming-in-the-nicu/#commentsMon, 18 Apr 2016 21:20:57 +0000http://www.ohsu.edu/blogs/doernbecher/?p=6101Read More]]>The moment your child is admitted to the NICU, your life changes. Below, Megan explains how she stayed afloat in the NICU and shares some tips for other families who aren’t sure who or how to ask for help.

***

The birth of our youngest son on June 20, 2014, marked the beginning of a 3-month stay at OHSU Doernbecher Children’s Hospital. Although a prenatal diagnosis meant we were expecting a stay in the NICU, our family felt like we were thrown into the deep end of the proverbial pool.

As the mom, I felt like I was drowning in new medical terminologies, environments, demands, rhythms and uncertainties. It was sink or swim for the sake of our son. One fact I knew for certain: I needed help.

I slowly learned to ask for help, though it took longer in some areas than it did in others. At first, my voice was weak and sputtering, but with time, it became more clear and confident. No pamphlet or book could have prepared us for life in the NICU, but I hope my experiences will be helpful for other families learning to “swim” in the NICU.

Getting clarity from your care team

After experiencing my first set of “rounds” in the pod, I felt like I had more questions than answers – the medical staff seemed to be speaking a foreign language in an alternate universe and there were multiple unfamiliar monitors and equipment attached to my son.

On day 3, I realized my son’s nurse had been his nurse the day before. She was my first lifeline. I was discharged and able to spend some more time at his bedside. Nurse Mary slowly explained the equipment I was curious about, she talked through the different types of care she was providing and offered the postpartum practical tips for where to find pumping supplies and how to order lunch.

The next day when the doctors discussed my son’s case and post-surgery treatments, my mind was full of even more questions. Nurse Mary answered a lot of them and encouraged me to talk to the doctors for further clarification. I remember being surprised by the fact that we could actively participate in these conversations instead of letting them talk among themselves. My husband requested to talk to a doctor at the convenience of their schedule.

These initial conversations with the doctors laid a foundation for a mutual trust and respect with the end goal of improving our son’s health. The attending doctors were very knowledgeable with regard to diagnoses and treatments and the residents continually made time to answer our questions, even if it meant doing additional research or consulting their colleagues. They were eager to provide the help that we, as parents, needed.

Building your hospital team

While the doctors and nurses coordinated the care of my son, I soon realized that there were other hospital staff members who were available to care for patients’ family members. There is a social worker dedicated to the NICU patients and their families. The social worker can help with lodging, with postpartum care and with many other individualized need-based services.

In addition, a newly-formed hospital committee, which includes hospital staff and “graduate” parents, is dedicated to supporting NICU families at OHSU Doernbecher. The committee hosts activities near the unit and is also available to meet upon request. The committee is a great resource for those seeking conversation with and support from parents who have found themselves in similar circumstances. They understand what you’re going through, because they’ve been there.

Reaching out to volunteers

Weeks passed before I even considered leaving my son’s bedside vacant for an extended period of time during the day. I was “that mom” – the one who would have slept there if she could. Volunteers are often available to help on the unit – they provide an extra set of arms to hold your child if you need an afternoon away. Others serve families by taking pictures of the babies on unit and delivering printed copies back to the bedside. These volunteers delight in caring for the smallest lives at OHSU. Never hesitate to approach a volunteer and ask for help – that’s why they’re there!

Asking family and friends for help

This last category of caregivers seemed to be the easiest to ask, but in the early days it’s hard to know what to ask! The moment your child is admitted to the NICU, your life seems to shift into crisis mode. Many friends and family generously offered to help – I’ll do anything I can, just name it! – but I wasn’t sure what I needed initially.

I found that offers to do very practical, simple tasks (bringing food, providing childcare for our older children, visiting to hold the baby at his bedside) were most helpful for us. Friends and family who were able to visit us on the unit were given a unique perspective on what life was really like with an infant in the hospital. Our visitors seemed to have an immediate compassion for our situation and they carried that into interactions after our child was discharged.

Simply being present by visiting was so helpful for us. We asked family to take our older children into their home for extended stays so we could focus our care on the hospitalized child. We asked those that were providing extended childcare for us to bring our kids to the hospital for a fun visit. We would take the kids to the playground at Doernbecher, go for a walk or ride the tram down for a treat at a nearby cafe. We asked other friends to come sit with our son so we could take a break away from the NICU and care for our older children for a day.

I quickly developed friendships with other NICU mamas who spent extended time on the unit. Sometimes, we would order meal trays at the same time so we could “have lunch” together or we’d escape the hospital for an hour or so to grab coffee or appetizers.

Our time spent together off of the unit were unforgettable. We could relate. We didn’t have to ask each other what it was like to have an infant in the NICU, because we already knew what it felt like. These “on unit” friendships provided a big help, because much like the pods in which we lived our lives, we didn’t feel isolated. We knew we weren’t alone. Often times, I found that family and friends helped buoy me up when I found myself sinking.

Every year, more than 5,000 babies in Oregon and Southwest Washington are born too soon. OHSU Doernbecher has joined thousands of teams across the country that support the March of Dimes‘ March for Babies. Interested in participating? Join Team OHSU/Doernbecher Tiny Feet!

]]>http://www.ohsu.edu/blogs/doernbecher/2016/04/18/swimming-in-the-nicu/feed/2Once upon a time: Mae Lin’s Doernbecher storyhttp://www.ohsu.edu/blogs/doernbecher/2015/04/24/once-upon-a-time-mae-lins-doernbecher-story/
http://www.ohsu.edu/blogs/doernbecher/2015/04/24/once-upon-a-time-mae-lins-doernbecher-story/#commentsFri, 24 Apr 2015 23:09:32 +0000http://www.ohsu.edu/blogs/doernbecher/?p=5296Read More]]>“Once upon a time in the Kingdom of Big, a little girl arrived early – so early she surprised even her mom and dad. Being so tiny was fraught with danger, what with all that breathing to do! Worry ruled the kingdom. Luckily, genius giants were at hand (though everyone was giant to her). Using their jumbo-sized brains, hearts and doohickeys, they eased our pint-sized hero up to fighting weight, which was the perfect weight for a fighter like her.”

In case you hadn’t guessed, the “Kingdom of Big” in the story above is Doernbecher Children’s Hospital. The “pint-sized hero” is a little girl named Mae Lin (she’s now 7 years old), who spent the first few months of her life in the Doernbecher Neonatal Care Center (DNCC). Mae Lin narrated her story for a radio spot that’s being aired on local stations.

We turned to Mae Lin’s mom, Dr. Dawn Nolt, for another important perspective in Mae Lin’s Doernbecher story. Dawn is a pediatric infectious diseases specialist at Doernbecher, and her work takes her all over our hospital, including the DNCC. Below, Dawn explains how her medical background and her Doernbecher connection impacted her experience as Mae Lin’s mom.

***

You learned some unexpected news at an ultrasound appointment. Can you tell us about that?

The ultrasound showed that my daughter was much smaller in size than what is expected at that point in a pregnancy. My physicians immediately placed me in the hospital and delivered my little girl, Mae Lin, two days later. She was born at 28 weeks in the pregnancy (a pregnancy usually lasts 37-40 weeks).

It was expected that the amount of time she’d spend in the DNCC would be equal to the amount of time she should have stayed in my womb (as long as she had no unforeseen issues like infections or surgeries), so we expected her to be in the DNCC for about three months. Thankfully, she did very well and was able to leave at 2 1/2 months.

What was it like being both a mother and a doctor in the hospital where your daughter was treated?

I didn’t work with any DNCC patients while Mae Lin was hospitalized, which temporarily removed my role in the DNCC as a physician. Instead, I visited the DNCC as “Mom,” reassuring doctors and nurses that they should talk to me as a parent, not as a physician.

Like any new mother, I was worried about how Mae Lin was doing. However, I had worked with the DNCC doctors before when caring for other patients, so I knew they would do as wonderful a job with my daughter as they had with other patients.

What’s Mae Lin up to these days?

She’s your average first grader: eager to go to school and very proud of her hard work when she accomplishes her tasks. Mae Lin is friendly, and she’s pretty quiet until she’s comfortable with her surroundings. She thoroughly enjoys her extra-curricular activities and has weekly lessons for swimming, acting and martial arts (hence the “fighter” references in her radio spot). She loves geocaching and fishing and she’s always able to give her opinion when asked.

This year in school, Mae Lin’s class learned about stories and how they’re structured, so she’s had the opportunity to share her story with her classmates.

Every year, more than 5,000 babies in Oregon and Southwest Washington are born too soon. OHSU Doernbecher has joined thousands of teams across the country that support the March of Dimes‘ March for Babies. Interested in participating? Join Team OHSU/Doernbecher Tiny Feet!

]]>http://www.ohsu.edu/blogs/doernbecher/2015/04/24/once-upon-a-time-mae-lins-doernbecher-story/feed/0Bringing comfort to families in the Doernbecher Neonatal Care Centerhttp://www.ohsu.edu/blogs/doernbecher/2013/12/11/bringing-comfort-to-families-in-the-doernbecher-neonatal-care-center/
http://www.ohsu.edu/blogs/doernbecher/2013/12/11/bringing-comfort-to-families-in-the-doernbecher-neonatal-care-center/#commentsWed, 11 Dec 2013 15:00:48 +0000http://www.ohsu.edu/blogs/doernbecher/?p=3553Read More]]>Having a baby in the Neonatal Intensive Care Unit (NICU) can feel like you are on a roller coaster. It can be both joyous and stressful, happy and scary.

The NICU Family Support Program provides support and a variety of activities for families, including group craft activities, group meals, sibling activities, photography, special events, including NICU baby showers, holiday parties and much more. The program also welcome donations of certain craft items, including yarn, scrapbooking materials, meals and more.

The program is looking for volunteers, including NICU graduate families. While a baby is in the NICU, many families appreciate the support they get from a parent “who has been there.”

If you are interested in learning about volunteer or donation opportunities, or if you are a graduate of the DNCC and want to reconnect, please contact: jhorner@marchofdimes.com. All NICU Family Support volunteers must complete the required screening and training requirements.

]]>http://www.ohsu.edu/blogs/doernbecher/2013/12/11/bringing-comfort-to-families-in-the-doernbecher-neonatal-care-center/feed/0‘March for Babies’ provides critical support for Doernbecher NICU familieshttp://www.ohsu.edu/blogs/doernbecher/2013/04/05/march-for-babies-provides-critical-support-for-doernbecher-nicu-families/
http://www.ohsu.edu/blogs/doernbecher/2013/04/05/march-for-babies-provides-critical-support-for-doernbecher-nicu-families/#commentsFri, 05 Apr 2013 14:00:39 +0000http://www.ohsu.edu/blogs/doernbecher/?p=2198Read More]]>Many of us will be gathering at the Rose Quarter Saturday, April 27, at 9 a.m. for the annual March of Dimes “March for Babies” fundraiser. The March of Dimes’ mission is to improve the health of newborns by preventing birth defects, preterm birth and infant mortality, and OHSU Doernbecher Children’s Hospital proudly partners with them to support this mission for newborns receiving care in the Doernbecher Neonatal Care Center (DNCC).

Having a baby born early or ill can be extremely stressful for families. During the past nine years, the March of Dimes NICU Family Support Program has provided emotional support, education and activities for families while their infants are receiving care in the DNCC.

Proudly sporting a “Big Brother” T-shirt.

The March of Dimes is able to provide funding for research and community grants, and help support programs because of the critical funds gained from events such as “March for Babies.”

The NICU Family Support Program provides parent care kits, sibling support, including Big Sister/Big Brother backpacks and T-shirts, toolkits for Dad, and care kits for moms on bed rest.

In addition, each month the NICU Family Support Program hosts at least 15 activities for NICU parents, including scrapbooking and craft hours, photography, parent support group lunches, dinners with former DNCC parents, Sibling Saturdays and other education hours.

In addition to providing such a wide variety of activities, the March of Dimes is a reassuring presence for families, what I like to refer to as, “a shoulder to lean on.” The value of this continued support for families is priceless.

DNCC toolkit for Dads

We welcome your support and invite you to join our DNCC team by clicking here.

This year marks the 15th anniversary of the Heart of Doernbecher Auction. On Saturday, April 20, Doernbecher supporters will come together at the Portland Art Museum to enjoy dinner, music, silent and live auctions, and a moving testimonial from a Doernbecher family.

Contributions to the Heart of Doernbecher Auction make a substantial impact on the lives of children receiving treatment at Doernbecher.

The Heart on the Hill, as it was called then, was a thank you dinner and auction that concluded the golf tournament. The tournament and auction had great support from the grocery and food industry, and to this day, many of the original companies continue to sponsor and support the Heart of Doernbecher Auction.

After a few years of running the event, the Women for Children chapter decided the event could be even more successful if they passed it along to the Doernbecher Foundation to plan and execute. The name was changed and the first official Heart of Doernbecher was born in fall 1998.

Today the auction brings together hundreds of community leaders from Oregon and southwest Washington to raise money for the hospital. To date, the event has raised more than $7 million for Doernbecher.

]]>http://www.ohsu.edu/blogs/doernbecher/2013/04/01/what-is-the-heart-of-doernbecher/feed/0Doernbecher NICU staff create ‘Kangaroo Covers’ for parents and babieshttp://www.ohsu.edu/blogs/doernbecher/2013/02/11/doernbecher-nicu-staff-create-kangaroo-covers-for-parents-and-babies/
http://www.ohsu.edu/blogs/doernbecher/2013/02/11/doernbecher-nicu-staff-create-kangaroo-covers-for-parents-and-babies/#commentsMon, 11 Feb 2013 15:00:57 +0000http://www.ohsu.edu/blogs/doernbecher/?p=1810Read More]]>In the Neonatal Intensive Care Unit (NICU), a simple touch between a parent and baby can have such a meaningful significance that it is too wonderful for words.

Several months ago our staff in the Doernbecher Neonatal Care Center (DNCC) was asked, “What do you want parents to remember the most about their experience in the NICU, specifically a take away ‘Signature Moment’?”

Most answers centered around the moments when parents actually get to touch their baby, from changing a diaper to simply allowing their baby to hold their finger to providing them comfort.

A parent holding their baby skin to skin, also referred to as “Kangaroo Care,” is an experience that was defined as the ultimate “Signature Moment.” Collectively, our staff decided that allowing more Kangaroo Care opportunities and other parent-driven bonding moments with their baby would be the focus of our Signature Moment.

In order to facilitate more bonding moments, a DNCC nurse suggested we develop breastfeeding covers to assist parents with privacy and provide extra warmth for the baby while enjoying Kangaroo Care. This idea took off! With lots of research and volunteers, a redesigned, special DNCC nursing cover was developed. Our staff voted on many names for the covers, and “Kangaroo Covers” was the winner!

It was decided that every baby would receive a Kangaroo Cover as a gift from OHSU Doernbecher Children’s Hospital, to remind them of that “Signature Moment” they shared with their baby in the NICU.

In December, the DNCC celebrated the launch of the Kangaroo Covers with a baby shower-like party open to all Doernbecher families as well as staff. Parents had fun picking a cover from the many colors and patterns, while enjoying cake and refreshments provided by the March of Dimes.

This served as a wonderful opportunity for staff to be able to teach parents about the benefits Kangaroo Care has for both the parents and the baby.

Maintaining the program and striving for ways to continue that “Signature Moment” for our families is our goal for 2013, and we look forward to immense possibilities.

A big “thank you” to all of the staff, volunteers and March of Dimes for making THIS “Signature Moment” possible!

]]>http://www.ohsu.edu/blogs/doernbecher/2013/02/11/doernbecher-nicu-staff-create-kangaroo-covers-for-parents-and-babies/feed/5Delivering a breath of life — via robothttp://www.ohsu.edu/blogs/doernbecher/2012/08/09/saving-babies-40-miles-away/
http://www.ohsu.edu/blogs/doernbecher/2012/08/09/saving-babies-40-miles-away/#commentsThu, 09 Aug 2012 14:00:47 +0000http://www.ohsu.edu/blogs/doernbecher/?p=507Read More]]>As I watched that beautiful, healthy, happy baby on the computer screen during my TV interview last week, I recalled my first encounter with him back in April. I was paged for a telemedicine consult with Silverton Hospital and informed that a mother was being taken for an emergency cesarean section because the baby was in distress.

When I connected to Silverton by way of the OHSU Telemedicine Network, I found the Silverton medical team was hard at work resuscitating a blue, lifeless baby. Quickly surveying the scene allowed me to draw on the experience and practice I’ve had during my training. Working with the Silverton team, we were able to clear the baby’s airway, and shortly thereafter the previously lifeless baby was pink, vigorous and breathing spontaneously.

I’ll admit that I was a little surprised when I was first approached to do an interview about this case. Why do they want to do a story about something that we, as neonatology fellows, or my supervising physicians do nearly every day in the neonatal intensive care unit? But as I’ve seen the response to this story, it has become acutely clear to me – I have an awesome job: A job that I love, a job in which I have the opportunity to save lives and help others do the same.

Telemedicine has added a new dimension to the impact that we as neonatal specialists are able to have on babies and their families. And what I’m finding is that impact is not only here in the Doernbecher Neonatal Care Center, but is extending out into the community as we expand our telemedicine program.

During medical emergencies we are not only able to share our experience and knowledge from the training we receive, but we can use visual cues to provide key aspects of care. Without these cues, the depth of support that we can provide to other physicians is certainly stunted. How can you offer input on vital technical skills required in resuscitating a baby if you can’t even see the resuscitation being performed? Assisting with life-saving procedures requires continuous feedback between you and your team, and visual cues speak volumes.

I’ll be the first to confess – I initially had doubts about telemedicine as a tool for helping treat infants at hospitals around Oregon. Patience and practice have enabled me to find better ways to help a struggling baby by not using my hands-on clinical skills, but rather my communication skills during these consultations. Seeing the lives that have been positively impacted by this “instantaneous subspecialty care” at our local community hospitals has made me, I must admit, a telemedicine convert. Moving forward, I will not take my role in this critical time of each newborn’s life for granted. And I will think about that adorable, chubby face smiling back at me through the screen as a reminder of this privilege.